Monday, July 24, 2017

Charlie Gard: Court Ordered Dignity by Death

July 24, 2017

By Anna Morris, Co-Editor, FFOA News Network

Despite so many advances in medicine, inescapable tragedies still sear scars on souls, forever haunting the lives of those who loved and tried so hard. In some small way those tragedies can be softened and transformed if those left behind know that some good came from the personal devastation.

Lawyers, judges and medical experts in England and the continent seem determined that baby Charlie Gard's short life will leave nothing behind but bitter memories. Charlie's parents Connie Yates and Chris Gard demand that it not be so, that their baby shall receive an experimental treatment in the U.S. [1] Travel and other expenses are guaranteed by the donations of over 80,000 people which total in excess of $1.65 million USD yet courts continue to decide that baby Charlie must die by judicial order. [2] They cite "right to die" and it is full speed ahead and damn the parents who choose one last option that may help their child.

Charlie Gard has Mitochondrial Depletion Syndrome (MDS). It is a genetic condition and both of his parents carry a faulty gene. The treatment available in the U.S. consists of oral medications that replace molecular building blocks necessary for life, which Charlie's body cannot produce. [3] Mitochondrial DNA is responsible for the energy needs of our bodies. Failures in mitochondrial DNA can lead to weakness and organ failure which is seen in Charlie Gard at this time.

The treatment offered to Charlie but denied by the English and European courts is called, "deoxypyramidine monophosphate bypass therapy (NBT," according to www.frontlinegenomics.com. [3] That is probably more information than the casual reader desires yet the actual treatment is fairly simple, a pill which has to be taken daily and which, "requires continued treatment." It is not considered a cure but it, "has already been used on 18 MDS patients with some level of success, which it has been considered so carefully for Charlie's case," states Frontline Genomics. [3]

There you have it. Other medical experts, not the ones intensely fighting Charlie's parents in court, have carefully considered if the treatment could help the British baby and they think it may. We are talking about a pill a day consisting of bio-necessary building blocks Charlie's body cannot manufacture, not some agonizing, life prolonging torture forced upon a baby for the sake of medical experiment. Eighteen other patients have had the treatment.

There are plenty of medically approved treatments that prolong and produce agony, frequently court ordered in children's cases, such as multiple rounds of chemotherapy for children with cancer. The British courts seem to believe baby Charlie is just about brain dead anyway, so where is the prolongation of suffering which seems to be their concern?

Or is it just about the "right to die" and if so, Charlie Gard's tiny life may have much deeper meaning for all of us. Wesley J. Smith in a short article at National Review begins by saying, "Advocates for letting Charlie Gard's parents decide when and if to remove life support...are crying foul." Little Charlie's court appointed barrister, Victoria Butler Cole is, "The chairman of the Board of Trustees for Compassion in Dying," according to Mr. Smith. He goes on to say Compassion in Dying is a sister organization of another organization called Dignity in Dying which, "most certainly does", "promote assisted suicide." [4]

The Compassion in Dying website seems quite straight forward about assisting individuals to make end of life decisions. However the Dignity in Dying website which does promote assisted suicide clearly states, "Our sister charity, Compassion in Dying provides free Advance Decisions and information on end of life rights." (Emphasis mine.) [5]

In summary, Charlie Gard is a baby a couple weeks short of his first birthday, whose body cannot function much at all due to a genetic condition. There is a slight hope that a pill, taken by mouth, which replaces what his body cannot manufacture, may give him a chance of improving and living. Some sources suggest his chance for improvement is only 10% and no one suggests he could have a normal life. In a Guardian article earlier this month, Charlie's mum, Connie Yates was quoted, "I would not be able to sit there and watch my son suffer and be in pain," but she also claims her baby does get enjoyment from life and still, "enjoyed his tickles." [6] Amazingly that article is entitled, "Charlie Gard: Pope and Trump Biggest Help in Keeping Him Alive, Says Mother."

Who benefits and who loses from the court ordered dignified death of this baby? Is it really about the child Charlie or about court power over parents and healthcare decisions? It seems once the first court ruling goes against family in these cases the courts fight with everything they have to show the people they hold all the power, that yes indeed, life and death are held in their claws and woe to the people who fight back! If Charlie's parents are forced to relinquish their best judgement and heart felt desires and the courts win, how will those courts expand their powers to include other children the next time and the next time and on into the future?

Meanwhile over a million and a half dollars USD has been raised to take baby Charlie off the hands of England's National Health Service. How many scarce healthcare pounds sterling are being spent keeping little Charlie on life support until the courts can finally kill him? Who would be harmed if he was quietly loaded onto a plane and flown to the U.S.? Oh, the courts may say this denies the child the right of a dignified death. Apparently those courts cannot see the possibility that tiny Charlie could respond positively to the treatment and in so doing, add knowledge to the fight against these devastating mitochondrial diseases. We are not talking about painful surgery or drugs with horrific side effects, but about replacing via a pill, what Charlie's body cannot make on its own.

Courts should never have jurisdiction over hope. By insisting on death the doors close forever on what might have been. No one is claiming Charlie can completely recover or become absolutely normal but there are many children who have meaningful, even good lives though very much disabled. Charlie has parents who love him deeply and that is more than many healthy children ever have. If Charlie, "enjoys his tickles", he has somewhat more than do many severely neglected children.

Instead of leaving Charlie's parents with bitter lifelong scars over court ordered death for their baby, let him try the treatment that is already offered and paid for. If scientists fighting these diseases learn anything from treating Charlie he will have contributed to the sustaining of life, if not for him, perhaps for others who will be born like him.

If Charlie remains figuratively chained to his crib in England until the courts make sure he is dead, we are all losers. Charlie's parents lose the child they love and want to nurture no matter what. All parents lose when courts take parental rights. Science loses what might be learned. Any of us who are disabled, who are or may become old and infirm-- in short most of us-- will know the death's head shadows of lawyers, judges and courts may now find it easier to decide when our lives are dignified and when we deserve a court ordered death. Couple the cold blood of the judiciary with financial shortages in the healthcare industry and we easily come up with what Hitler called, "Life undeserving of life."

Emotion is running so high over Charlie Gard that news today reports death threats and semi-violent protests directed at the hospital and staff that holds Charlie. It is of course hypocrisy to champion life through death threats.

Martyrs throughout history have laid down their lives and in so doing, triumphed. Keep hope and knowledge alive, let little Charlie come to America for treatment. If cold blooded courts demand he die in England, he dies a martyr's death. Pope Benedict and President Trump have turned Charlie Gard into an international incident. Emotion is already high. If this baby is denied all hope and dies by court order, his short life will forever direct attention to the power of courts to walk over families to dispose of the disabled. Do not imagine people will think deeper than that. Martyrdom is about raw emotion.